'Portraits of Perseverance' is an on-going multimedia community project that follows the lives of Malaysian women who persevere in the face of chronic illnesses, disabilities and transgender discrimination. It consists of blogs, video journals and TV documentaries. The first project (2011 to 2012) tells the stories of Lucy, Nisha, Pong and Sulastri. The second project in 2013 brings you Pong’s rehabilitation journey.

Friday, 8 July 2011

Persatuan SLE : Of Delights, Laughters, and Pain. Part 2.

After lunch, Swee Lian decided to bring us to one of her favorite relaxation spot nearby the hawker stall. We had to walk pass a tiny bridge which was actually placed over a huge longkang (drain) across the tall grasses and finally came to her spot. It was incredibly breezy there and strangely calming. Nobody would have even noticed or taken a second glance at that spot if they weren't observant enough to actually notice the beauty and tranquility of the place. The spot overlooked a grassy football field with a couple of young boys playing as if they hadn't a care in the world. It wasn't hard to see why Swee Lian loved it there. We quickly took out the camcorder we had with us and recorded what she felt about things in general, as well as a short interview with Lucy and Leo. Swee Lian was a natural with the camera and we were so pleased that it was so fun and easy to work things out with her.

"Dealing with deaths and telling the patient's family the risks it brings" was answered in unison by both Swee Lian and Lucy when asked what was the hardest part of the job. It sounds pretty tragic actually but they both manage to make it sound light and simple which made listening for the both of us all that much easier as well.

It was true though. Imagine yourself having to be the one to tell a husband that his wife is in very real danger of actually losing her life during a counselling session. But Swee Lian and Lucy said it was hard to runaway from problems, and one of their main jobs were to try and make these facts amore acceptable - rather than just giving advice. Despite the angling of how SLE Association was more for counselling, Swee Lian denied that they were good advisors, be it counsellors. Yet, all they want to really do is just to be there for the families and patients when they are truly needed because moral support is very essential during the journey for an SLE patient.

After all the recording, we all headed back to the office building and were about to leave when Swee Lian held on to one of us and insisted that we stamped our parking tickets before exit for a cheaper rate. While she sent her intern up to get the stamp, we talked to her a little more regarding the voluntary services that she may need. She was more than delighted to hear that people were willing to extend a hand to help. Leo came down soon after and tht was when she sent us of with a great bright smile.

If we hadn't been there that day, we would never have guessed what went on behind that infectious smile of Swee Lian. She had been both inspiring and a great companion that day and we were both incredibly grateful to have crossed paths with such an amazing woman.